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Independent Living News & Policy from the National Council on Independent Living

Add Your Organization as a Signatory to NCIL’s Chronic Pain Advocacy Letter to Congress

In 2019, the Centers for Disease Control and Prevention (CDC) issued warnings to policymakers that a range of policies aimed at addressing the opioid crisis through limiting prescriptions—especially policies based on misinterpretations of its 2016 prescribing guideline—are increasing barriers and causing harm to people living with pain. Many who have relied on opioids, often for decades, are seeing their medication forcibly reduced or eliminated; in increasing numbers, the same group of people is being denied medical care altogether. The Food and Drug Administration concurrently issued an alert about the dangers of abrupt opioid cessation.

Despite these safety alerts and our success in 2019 as a disability community in preventing federal policies that create inflexible limits from passing into law, several soon-to-be-introduced bills double down on stringent, one-size-fits-all limits.

Because many people with disabilities live with serious or chronic pain, our community is disproportionately affected by these policies. The harm caused by these policies, which may range from increased pain, to loss of function, to suicide or resorting to illegal substances, has now been documented in numerous studies.

Therefore, NCIL has drafted a letter, which will be sent to Congressional Leadership, leaders of key committees working on these issues, and sponsors of key bills. We are writing to ask Congress not to contravene the warnings of our public health agencies and to await the outcome of ongoing efforts by the CDC and the FDA (in consultation with the National Academy of Medicine) in updating prescribing guidelines for acute and chronic pain. 

As organizations that advocate for the rights of people with disabilities, we hope you will add your organization’s name as a signatory to this letter. Nearly 100 organizations signed a similar letter in 2019, which greatly enhanced our advocacy efforts. You can add your organization at the link above or by emailing lindsay@ncil.org. The deadline to sign on is Tuesday, March 9, 2021.

Additional Information

The most problematic policies are based on misapplication of the CDC’s Guideline for Prescribing Opioids for Chronic Pain. These include:

  • Strict limits on opioid prescribing for acute pain, often of 3-7 days
  • Applying dosage guidance designed for opioid naïve individuals to people currently taking opioids and the physicians who care for them
  • Mandatory or abrupt tapering off opioids and patient abandonment
  • Overreach to unintended populations

Additional information on each of these can be found in the letter.

The CDC and FDA recently issued several clarifications as a result of the harms being caused to people with chronic pain:

While we have significantly decreased access to opioids, there has not been a responsive increase in access to or coverage of non-opioid treatments.  One of the bills addressed in the letter – the NOPAIN Act – which we support, attempts to expand such treatment. Nevertheless, it is insufficient, as people with pain need access to the full spectrum of available modalities of pain treatment.

As organizations advocating for the rights of people with disabilities, we hope you will join these efforts to call on Congress to focus on the needs of people with chronic pain.

Further Resources

Comments

  1. I’m a severe case intractable pain patient . Without my meds I’d be living in horrific pain induced tears, nausea and vomiting! Pain is a very serious disease that requires adequate pain control. It’s unfathomable and completely inconceivable to Not treat pain. We, the CPC Deserve respect, compassion and our human right to proper healthcare. Disenfranchising us from our Dr care is extremely dangerous & it’s costing lives. When we don’t have pain care there is no health or care. Its time we stop discriminating patients & Drs & give them back the respect, honor & stability they deserve! Opioid therapies not only sustain lives they help inflammation and pain. Quality of life is enormous to those who suffer this much detrimental pain They also help with healing and protect the sick from getting sicker. It is beyond time our voices be heard! It’s time we respect science and our human Rights to adequate pain control /care. It’s time our doctors have control over the care of their patients, nobody without a Dr degree should be able to dictate or evaluate the patients care.

  2. Kim Buchholtz says

    I’m a CHRONIC PAIN PATIENT
    WHO is SUFFERING AND BEING TORTURED to DEATH BECAUSE my PAIN MEDICATIONS were reduced .
    I can’t take this HORRIFIC PAIN anymore. CHRONIC PAIN is the WORST PAIN IMAGINABLE EVERYDAY FOR years AND years. I would of never BELIEVED that you COULD be in this much HORRIFIC PAIN UNTIL it HAPPENED to me. It’s like the PAIN SIGNALS ARE stuck WIDE OPEN AND don’t shut off like they should. If you or your FAMILY MEMBERS ENDED up with CHRONIC PAIN you will SUFFER to UNTIL your DEATH. These PAIN MEDICATIONS ARE MIRACLES FOR US to RELIEVE terrible PAIN AND SUFFERING. We have used these PAIN MEDICATIONS FOR DECADES AND they made it POSSIBLE to take CARE of OURSELVES AND FAMILIES or work .
    I can’t even take CARE of MYSELF AND I live alone I lost my husband in a bad accident in 2016.
    2003 I was in a bad accident. I have a brain injury, three bleeds in my brain fractured neck back broken collarbone AND paralyzed on my left side with hard work AND PAIN MEDICATION that MADE it POSSIBLE to take CARE of MYSELF AND FAMILY AND I even RODE my HORSE AGAIN.THIS HELPED me MENTALLY AND PHYSICALLY UNTIL. 2007 terrible PAIN stimulator surgery that caused me MORE and new PAIN along the panic attacks. Then I was taken down on my PAIN MEDICATIONS.
    I never RODE my HORSE AGAIN or walked my dog. PLEASE HELP US .
    This is the WORST CRIME in HISTORY AGAINST CHRONIC PAIN PATIENTS AND VETERANS who ARE SUFFERING and COMMITTING SUICIDE BECAUSE WE CAN’T ESCAPE the HORRIFIC PAIN.
    We take our MEDICATIONS as PRESCRIBED. We are not DRUG ADDICTS who ABUSE ILLEGAL DRUGS. I’ve tried everything to get out of PAIN but NOTHING worked but PAIN MEDICATIONS that gave me pain relief. I’m DENIED the PROPER dose of PAIN MEDICATION to get me out of this HORRIFIC UNBEARABLE PAIN. PLEASE HELP me and all the CHRONIC PAIN PATIENTS AND VETERANS WHO ARE SUFFERING AND BEING TORTURED to DEATH

  3. Catherine Mason says

    Someday you or a family member may need major surgery. any of you may have an accident or develop an illness which causes excruciating pain. And because of you going along with this ridiculousness you or your family will suffer. Do you really want to wait until it’s too late to do anything about that? I will tell you that no matter what you do the drug addicts will keep dying. You could stop every single pharmaceutical company from producing opiates. The drug addicts will have no qualms in going to the street and more will die from illicit fentanyl. I know because that’s how my son died after a 20-year addiction to opiates. And he didn’t become addicted to pain pills. He started doing heroin in high school with the older kids he was hanging out with. And I’m not blaming the older kids, he had Free Will and made the wrong choice. When he died of fentanyl he didn’t know he was taking fentanyl as most addicts who die from that don’t know what they’re taking. You will save none of the real addicts by stopping the distribution of prescription opiates. I’ve seen my son and his friends and they will just turn to street drugs and more will die. I’ve listened to chronic pain patience. As far as they’re concerned you will have more deaths. Many will commit suicide. Many already have. The others will turn to the streets out of desperation to relieve their pain.

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